The Oxygen Mask Project

The Oxygen Mask Project was founded by Shannon Knall and Alysia Butler.  A special thank you to both of them for allowing us to share this with our readers.

In the event that the cabin loses pressure, pull oxygen mask toward you to start oxygen flow. Put your oxygen mask on as quickly as possible. Help children and others with their masks only after yours is secure.

Once upon a time, a group of special needs moms started talking about their lives.

They talked about how devoted they are to their children and to making sure that their kids’ needs are met.

But somewhere along the way, they had forgotten to take care of themselves.

**********

It’s a matter of survival when we fly.  We need to be able to breathe on our own before we can help our children.

We listen when we’re on a plane.

Why don’t we listen in our daily lives?

To care for others, you have to take care of yourself as well. Too often, we feel guilty as parents when we take time to do something that is just for us.

It’s time to realize that when parents take care of themselves first, it’s not selfish.

It’s survival.

It’s how we can keep giving our best to our children.

We started this project to help parents remember that they need to breathe and take a moment to do something special for themselves each day. We wanted to give parents a place to feel supported when they take that moment to catch their breath.

We’re not talking spa vacation.  We’re talking sitting down for a meal.  Drinking our coffee when it’s hot. Or going for a walk.  Taking a nap.  Buying a new outfit.

Guilt free.

**********

The “Oxygen Mask Project” has two parts.  One piece is our blog.  We feature stories from parents about what they are doing for themselves.  These stories are the foundation for our project – the place where people can sit and reflect and gather ideas for making changes in their daily lives.

The second part is our Facebook page.  Join us there and post what you are doing that day for you.  We will cheer you on.  Others will too.  We want to know things like “went for a walk alone” or “went to the gym for the first time today” or “started back at college”.  We’re cheering people on via Twitter too, so join us there as well.

This project is about us.  Making little changes in our lives and supporting each other along the way.

Strength in numbers.

Let’s take that first deep breath together.

 

Shannon Knall is the mother of three boys; one with autism. She co-founded and serves as the Executive Director of Well Served Tennis Academy, a tennis camp for children with autism.  She has been the Connecticut Autism Speaks Advocacy Chair for Autism Speaks for four years, and responsible for leading grassroots campaigns to secure the passage and implementation of six autism-related bills (including insurance reform), along with securing co-sponsorship of federal legislation from Connecticut’s Washington delegation. She is the founder of the Greater Hartford chapter of Autism Speaks and the Inaugural Walk chair. With the help of a BCBA, Shannon developed the autism awareness Boot Camp used to train and educate businesses, communities and political leaders around Connecticut. For her activism, she is the recipient of the Congressional Certificate of Recognition from Congressman Chris Murphy, and in addition to her leadership in the autism community, serves on the Economic Development Commission in her home town of Simsbury, Connecticut.

Alysia Butler lives in Massachusetts and is the mother of three boys, two with autism spectrum disorder.  She is the managing editor of the SPD Blogger Network, and writes at Try Defying Gravity, her personal blog recounting the joys and challenges of raising three young boys. Her work has been published in The Boston Globe and Bay State Parenting Magazine, and online at Mamapedia, Autism Speaks and The Thinking Person’s Guide to Autism and is a monthly contributor to the Hopeful Parents website.  She also serves on her local special education parent advisory committee in her hometown.

Finding Hope in a One-Way Mirror

Written by guest blogger, Kristin Macchi

It was a foreign place to me, although I wasn’t comfortable anywhere those days. Five strangers in a small room, watching our toddlers through a one-way mirror. Together for 9 hours a week.

Welcome to a new level of autism awareness.

We started talking. Our children’s inability to connect instantly connected us to each other. We began to relax during this precious time when we weren’t the ones sitting on the floor, trying desperately to engage.

Outside of that room, however, I was spinning from what was happening to my world. I wasn’t surprised by the diagnosis because he had always been quirky, but the implications of the label still shook me to my core. I leaned on my husband so hard I was afraid I would push him over, so I tried to be strong, but all I talked about was autism from the moment he walked in the door from work until we went to bed. I thought I would suffocate him. Although we talked non-stop about daily therapies, I wasn’t able to tell him about what was consuming me, that I was afraid I was going to fail our son. I felt like I was drowning. I went from being completely confident to hesitating about every decision I made.

That room with the one-way mirror became the only place I could breathe.

We continued to see each other after that year, and one by one our group grew. The social worker, the EMT, the PT. The restaurant owner. The police officer. The teacher. The life coach with the Irish brogue. They kept joining us.

We are D’MAC – Determined Moms of ASD Children (the “D” becomes a variable on cocktail nights). No matter how different we are, or who we were “before autism”, we are all the same. With each new mom, we hear the mantra. “I thought I was alone. Now I know I’m not.”

We talk about everything, or nothing at all. Our kids play together and do special gym/swim programs that the local Y set up after a meeting with our group. Many of our husbands regularly hang out together now. We have regular “meetings” at the aforementioned mom’s restaurant, it has become our clubhouse and our safe haven.

We are connected. To the core. We see or talk to each other on a daily basis. We are there for each other without hesitation. When my son was having side effects from his new medicine and his doctor wouldn’t respond to me, I frantically called a friend at 9:45 pm. She is dealing with serious medical issues, feeling awful and trying to hold it together for her children (more than one of whom have special needs) in addition to working and running her fledgling non-profit. She shouldn’t have even answered the phone, but she did, and she genuinely offered empathy, support and much needed advice. When I saw her the next day for lunch, she looked fabulous and gave me a huge smile, even though I knew that she felt horrible. She gave me a hug and barraged me with questions: “How is he today? Did you make the calls? Did you adjust the meds? Do you feel better?”

I knew when he got the diagnosis that my life was about to change.  I just never expected it to be for the better. D’MAC has made this happen. I am able to share my thoughts confidently again, in fact I WANT to share my ideas to help my son and his friends. I want to help the parents of children who were diagnosed yesterday and will be tomorrow. I have found a strength I never knew I had inside me. I want other moms who feel like they are drowning to hear me, so they know that they are not alone. I am able to raise my voice clearly because I know that I have the strongest, most amazing group of women I’ve ever met standing by my side, ready to act. Without hesitation.

Kristin lives in Boston with her incredibly patient husband and two fantastic boys.  James, 8, is charming and loyal, and makes friends one video game at a time.  He also has an autism spectrum disorder.  Johnny, 6, is often called Johnny Drama because of his clever wit and flair for the dramatic. She writes about her family’s journey at http://runningtobestill.blogspot.com.